The cellulitis came back--travelling up left foot, leg, and hip. Lymph nodes in groin, swollen. All other symptoms, getting worse and worse. So, an infectious disease doctor prescribed 1gm Rocephini IV infusions for 7-9 days, as an outpatient. If it doesn't cure it, she then wants me to start Vancomycin. Am still taking the Doxyi and Roxi, of course. My Lyme doc thinks I need 2-3 months of IV treatment. But, we shall see. So far, so good. No overwhelming die-off, so far. In fact, aside from being tired, I feel pretty good, today.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA
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Minai - Sorry about the
Minai -
Sorry about the spreading cellulitis !
Glad you are doigng well on the IV Rocephini. You may or may not get a herx from it - don't know which one to wish for you :) Either way - hope you get quick resolution of the cellulitis !
As I am considering it for my husband I will be very curious to follow your progress.
Been studying the lyme data on IV Rocephin - at least 30 days is generally well studied to be efficacious in the med lit as is 90 days. If the first few days goes well you may want to consider the old in for a penny in for a pound and go the IV distance.
Best of LUCK! Good Healing! and keep us posted!
Daisy
Daisy - Husband on CAPi 5/07. Minoi, Roxy, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone,
Novantrone, Doxyi, Azithromycin, Flagyli___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Minai, Glad it went ok
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Thanks, Daisy. I think that
Thanks, Daisy. I think that I will press this infectious disease doc to continue the Rocephini for 30 days, depending upon how well I continue to handle it. I think that is all the insurance will approve it for. I hate the idea of a PICCi line, though. I handed this doctor D W's treatment schedule; Stratton and Sriram's contact info; and various PubMed abstracts of their publications. I hope she will read them, and maybe even relate well with Sriram, since she is Indian, too. But when I mentioned what my Lyme doc said about how long I should continue treatment for, she just kind of sighed and didn't respond.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAThank you, Wiggy! Will
Thank you, Wiggy! Will do.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAHere's hoping you'll get the
Here's hoping you'll get the whole course of Rocephini Minai, it's the Holy Grail for lyme and can really boost progress, but I hope you'll stay on the CAPi and get pulsing again soon..good luck.
Elinor ..... from England on CAP, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
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Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Here's hoping you'll get the
Here's hoping you'll get the whole course of Rocephini Minai, it's the Holy Grail for lyme and can really boost progress, but I hope you'll stay on the CAPi and get pulsing again soon..good luck.
Elinor ..... from England on CAP, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
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Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Thank you, Elinor.
Thank you, Elinor. Encouragement sure means much, coming from you. Am not sure about continuing with the Tinii pulses, just yet. Everytime I take just one, it triggers herpes symptoms. And, Sarah has reassured me that I do not necessarily have to do so. Am going to try my best just to stick with the Rocephini, for now.
--Minai
Day 2 Rocephini: Still
Day 2 Rocephini: Still going well. I wonder if 1 gm is really enough? Doctor said if lymph node swelling is not gone by Monday, she'll start the Vancomycin. I told her that I would prefer not to. That molecularely, Vancomycin is too large to cross the blood-brain barrieri. She told me, that it would if the meninges of the brain is inflamed. But, are mine?! There are also side effects of Vancomycin that I just don't like, either. Maybe if the lymph node swelling is gone, she'll continue the Rocephin. If she won't, I will have my Lyme doc do so. But, initially, he thought the cellulitis was gone, so wouldn't prescribe it, since he "would not lie," to the insurance company to have it covered. Maybe he can, now that I'm having more obvious symptoms. I think that I have had it for so long, now, that it is infecting my bones without any visible redness or heat. Just the lymph node swelling. Maybe the doxyi and roxi have been keeping most of the symptoms at bay. Am only theorizing here, of course.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAMinai - Just a
Minai - Just a thought...you could try to get your doc to give you 2 grams a day for Rocephini for a couple of days before you go to Vanco. You could also get an IV quinolone. I know you are afraid of it - but I'd be more afraid of the spreading cellulitis.
Whatever you do - don't fool around let the cellulitis get any worse.
Daisy - Husband on CAPi 5/07. Minoi, Roxy, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone,
Novantrone, Doxyi, Azithromycin, Flagyli___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Daisy, now, there are some
Daisy, now, there are some great ideas...that's what I'll do. Try for the 2gms before the Vanco. Yes. You know I'm afraid of quinolone, but must agree. It seems as if both my foot doctors, and even the Lyme doc have let the cellulitis go on for too long, now. They may have been able to argue that it was gone based on lack of redness and heat. But, now I have bone pain and now lymph node swelling. Just don't know how they can argue with that. Haven't had a WBC for over a year, either. Infectious disease doc is promising to do one on Monday.
Thanks for the ideas!
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USADay 3: Went well, as usual.
Day 3: Went well, as usual. Doctor wasn't in, so I couldn't ask for 2gms. They had to stick me twice, due to vein rolling. Not fun, given my needle phobia. Hopefully this line will last for 2 more days. That's how often it gets changed. Nurse suggested I ask for a bone scan. Don't know why it's never been recommended by my docs. Nor did I even know to ask nor what's involved. Due to bone pain, am worried that the cellulitis is in my bones.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAMinai, if the meninges of
Minai, if the meninges of the brain is inflamed, vancomycin will get in. If it isn't you don't need it to, so don't worry if that is thought to be the best thing. You are, after all, still taking the doxyi and roxy for the MSi.
Have you had the cellultis in your toe cultured? It might not even be caused by a strep or staph infection. In the UK you would be started on something to work against what is thought to be causing it, whilst a culture is grown. Then if the cause is found to be something different, the abxi would be changed............Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Thank you for the
Thank you for the reassurance about the Vanco, Sarah. I so need it. Yes, just took full doses of Doxyi and Roxi, after eating a bagel with cream cheese for brunch.
No. Not one doctor, of the 4, has even suggested culturing. They all assume that it is staph or strep. Oyyy! What if it really is a different infection and all of this is just a big waste of time and money, while the cellulitis just gets worse
Will ask the infectious disease doc about it, tomorrow. She will do bloodwork. Am wondering if the WBC will be high. The lymph node swelling is still there...I just checked.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAOh, and also...she never
Well, rocephini and
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Day 4: Doctor was going to
Day 4: Doctor was going to be very late seeing me. My husband was with me and had to get in to work, so we decided not to wait. So, no bloodwork or dose increase. But at least we are prolonging the Rocephini treatment. Had very bad sensitivity reaction to the waterproof tape they were using to tape the line with. Painfully red, was worried it was caused by the line. But all better now, since they replaced the tape with other kind. Just sore. Hurt like hell, when they were removing it.
Have been getting a strange tingling/burning, even icy, sensation on left side of face. Same side that I was experiencing osteomyelitis of my jawbone. It comes in waves. I hope that this is a good thing. Also, an annoying twitch in my right eye--same side as Bell's palsy and Trigeminal neuralgia in the past. Would love to see what happens with 2 gms.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USADay 5:
Day 5: Tingling/burning/icy sensation on left side of face increasing, but not painful. Also, discharge from behind the ears as when I had started Azith--just not as bad.
Saw doctor, today. Didn't do bloodwork. Good news is what I thought was lymph node swelling are tendons. One does look like a swollen cyst. She will phone the foot doc about the toe. She thinks the toenail needs to be removed to heal properly. Then, she sent me for an X-ray of the foot. I saw the films, but didn't know what I was looking for. Hopefully, no cellutis in bone. Sarah, am sure you are right.
Probably won't be able to justify the Rocephin for much longer. But might continue it with my Lyme doc.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USADay 6: Symptoms the same.
Day 6: Symptoms the same. X-ray of foot was negative for cellulitis in bone. Doctor will continue the Rocephini until the foot doctors clean up my toenail. My appt. is in an hour for that. Then, she wants me to send me for an X-ray of my hip because of the tendonitis, tomorrow.
Well, no wonder I have been in such pain in that lep and hip. And, no wonder I have been experiencing such an increase in spasticity. And, here, it was being attributed to cellulitis and/or die-off and pseudo-relapse of MS symptoms.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAI'm sure I said something
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Double post!!
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Stupid
Minai, You sound far more
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Minai - Just wanted to
Minai - Just wanted to make sure you saw this
According to the medical Textbook for Lymphology written for physicians by Foldi. Manual Lymphatic Drainage has an absolute contraindication for active infection including cellulitis. I didn't have time to read the whys and thoughts.
So good thing you didn't find a therapist - of course they should have known the contraindication. Also - not sure if you should be dry brushing right now either - based on this absolute contraindication for the manual lymph drainage you might ask your doctor before you dry brush anymore.
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone,
Novantrone, Doxyi, Azithromycin, Flagyli___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Hi MacK, Just a
Hi MacK, Just a bit...relieved is more like it
Am now a bit afraid of what the hip X-ray will reveal.
I hope that your Vitamin Di arrives soon, since sun is often hard to come by in Chi.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USADaisy, Many, many thanks! Am
Daisy, Many, many thanks! Am so glad to know the danger. I most certainly did reduce the overzealous massages from my husband and exfolliation that i was doing. And will ask the doc if dry-brushing is now OK.
You are not selfish, only rationally so! A characteristic that I initially suspected and admire you for! Thanks, again!
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAGood Luck with that hip
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Thanks, Wiggy. Will let you
Thanks, Wiggy. Will let you know how it goes with the ortho doc. Am so glad to know that you've gotten at least a little sun "up north." Last I had heard, you were still getting lots of snow.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USADay 7: This is where it ends
Day 7: This is where it ends with the Rocephini, for now. Infectious disease doc, officially proclaimed that cellulitis is gone. Now, it's off to the ortho guys for X-rays. Not sure, yet, what the Lyme doc would have me do. But, will continue on with Doxyi and Roxi, as usual.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAMinai, I hope your
Minai, I hope your doctor's proclamation about the cellulitis being gone is right. I've already prayed for you about your visit for the X-rays. Bless you,
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.